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Reality of HoPE

22 Nov

I know that it can be uncomfortable to be my friend especially when I share updates on children who are sick or dying. My deepest desire is that no parent would face a life-threatening diagnosis for his/her child and none of my friends would experience the pain and heartbreak of saying goodbye to one’s child.

Can I tell you a little bit about Holoprosencephaly (HPE)? It is the most common brain malformation in a developing fetus. It occurs during days 17-21 of fetal development, and as a result, it often ends in early miscarriage. It is estimated that HPE occurs 1 in every 250 pregnancies, so if you experienced a miscarriage without an explanation of why, HPE could be the reason.

Did you know that the likelihood of a fetus with HPE surviving to birth is only 3%? Let me say that again…3%! Can you imagine the determination and will it must take to overcome those odds?

When one of our children with HPE passes away, it rocks our HPE community. We grieve for the parents, siblings and families, but I know we also celebrate the power and strength these children have had in the moments, hours, days and years that have made up the lifetimes they have known.

I will never be as strong and courageous as these little ones have been in their lives, but their examples push me to step outside of my comfort zone, to give of myself to others in sharing my journey from HPE to HoPE.

If you would like to know more about HPE or would like to help our cause, please visit http://www.FamiliesforHoPE.org. To learn more about my personal journey, visit http://www.SammyYammy.com.

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Dandelions from Heaven

11 May

Dandelions from Heaven (Author Unknown)

Mothers Day is coming…and I wanted to send you a sign…
Something you can tell others…”Is from an angel of mine”.
So I searched the Heavens high and low for that perfect thing…
And low and behold I found it….and a smile I hope it will bring.

So when you look to the Heavens and see the yellow stars in the sky.
Just think of me…your angel…in the Heavens way up high…
And just imagine those stars…are dandelions up above…
Yes! Dandelions are also in Heaven, which you know how much I love.

So on this Mothers Day…when you awake and feel blue…
You will notice those yellow stars…are no longer in view…
So just look to the meadows and the dandelions you see…
Are the ones I’ve tossed down this Mothers Day from me!

And when you find a dandelion that has turned from yellow to white…
You’re supposed to make a wish…and then blow with all your might.
For you will be blowing kisses…to me in Heaven above….
And I will be catching them and blowing them back…sent with all my love.

Please know that I am with you…on this Mothers Day…
And also in the days ahead…God and I will never stray…
We will be with you in the morning…when you wake and see the sun…
We will be with you when you say your prayers…when the day is done.

For God and I will never be…very far from your side…
For I can now be everywhere…and God will be your guide…
So…remember when you see dandelions…it’s your guarantee…
That I am always close to you…For dandelions are free to roam…now just like me.

…brought to you by the number 9…

9 Apr

I was talking with some friends recently about how much we all enjoyed watching Sesame Street as children, so in that spirit, I thought I’d share some thoughts on the number 9.

Today is April 9, and in just a few hours, it will be Sammy’s 9th birthday.  Sammy lived 4 years and 9 months, and at some point during the next year, we will reach the day when Sammy will have been gone from us longer than he was here with us.  I know that day is coming, but I try not to think about it too much.  Instead, I choose to celebrate the anniversary of when that little miracle boy totally changed my life nine years ago.

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Always with me…

1 Sep

[His mother] kept all these things in her heart and thought about them often. (Luke 2:19; NLT)

I think of Sammy every single day, and quite possibly, I think of him at least once every waking hour of my day. Sometimes, I think of him for hours at a time. No matter where I am or what I’m doing, he’s never very far from my thoughts.

I’ve tried to find a way to describe what it feels like for me now, 3 years after his death. Although I can’t see him or touch him, I feel like Sammy is a part of every moment in my life. The best example I can give is early pregnancy–after the positive pregnancy test but before the fetal movements can be felt. From the moment of my positive pregnancy test, I was consciously aware that I was pregnant. Even though my mind might focus on whatever task was at hand, my thoughts would always drift back to the fact that I was pregnant. I could be typing at my desk, answering the phone, doing my job, but I was still keenly aware that I was pregnant. No one could see it, I didn’t feel it, but I knew that a new life was there. For those months I carried him in my body, he went with me wherever I went because he was a part of me.

Today, I can focus my mind on the tasks at hand; I can type at my desk, answer the phone, and do my job. I can drive in the car, shop at the grocery store, and do any daily task. All the while, Sammy is never far from my thoughts. In some ways, I could say that Sammy has simply moved to a new location in my body; I carry him in my heart, and he goes with me wherever I go because he is a part of me once again.

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RIP, my bff

9 Jun

Just a few days ago, I “upgraded” my beloved Blackberry and became an iPhone user.  As you would expect, I have a very sweet, inspiring version of the story about how it all relates to my life with Sammy, but I’m going to save that for a future blog entry.

For now, I need to confess the ugly truth.

My name is Leslie, and it has been 4 days since my last Crackberry fix.

After two years of solid performance, my Blackberry Curve (aka, my “bff”) died.  It was late on a rainy Saturday night, and I was over 2 hours away from home at a race track adjacent to a runway at Fort Wayne International Airport. (I’m not making this up!)

As my husband drove us home, he generously let me use his Blackberry Bold, but I absolutely hated it.  While I wanted to toss my Curve out the car window in frustration over its brokenness, after only 5 minutes with the Bold, I wanted to throw his phone out the window and drive over it (and maybe even back up and drive over it a second time for good measure).

The next morning as I was conceding to the demise of my Blackberry, my husband bore the brunt of my Crackberry withdrawal.  With my juvenile whining and grumpy attitude, I not only got on his last nerve, I managed to stomp on that last nerve and mash it into the ground like a spider under my shoe.  It was not one of my finer moments.  I’d compare it to the first time we attempted to hang wallpaper together as newlyweds, except this time, I seemed to be the only one throwing the tantrum.

Logically, I knew that I could go online and simply order a new phone, but overnight shipping wouldn’t be fast enough for me.  I needed a Blackberry, and I needed one quickly.  In search of the nearest Verizon Wireless store, I left the house squealing my tires like a crazed soccer mom running late for practice.

As I left the house, I’m rather certain that my husband mustered every ounce of mercy and grace in his soul to say a prayer for the patience and fortitude of the Verizon sales rep who would be the lucky individual to encounter my “lovely” disposition. It must have worked because before I reached the end of my street, I took a deep breath and had a moment of clarity in which I reminded myself that, “I’m a Christian woman, and I need to act like one.”

At the Verizon Wireless store, sympathetic Kyle drew the short straw and was the one who had to nearly pry my Blackberry Curve out of my hands (and also listen to my repetitive whine of, “…but there’s no keyboard”).  The Bold seemed like a downgrade from my Curve, and even the “new” Curve was a downgrade from my old Curve; thus, my grand leap to an iPhone.  Verizon Kyle patiently held my hand and helped me through the entire process, and I was able to walk out of the store with a fully-functional new “bff”.

I’d like to say that the drama ended there, and I happily drove off into the sunset . . . not quite.  I would spend the next several hours trying to type and erase on a touch screen, scrolling left when I wanted to scroll right, scrolling up when I wanted to scroll down, and tearfully questioning whether I would ever find technological compatibility again.

The loss of my “bff” was traumatic, but now four days later, I can say that my iPhone and I are quickly becoming very good friends.  It has already helped me do the research, make the call, and calendar the appointment for our first session of marital counseling because I think I see some wallpapering in our future!

Your comforts delight my soul…

11 Jan

I’ve been meditating on Psalm 94:17-19 all morning.

“If God hadn’t been there for me, I never would have made it. The minute I said, ‘I’m slipping, I’m falling,’ Your love, God, took hold and held me fast. When I was upset and beside myself, you calmed me down and cheered me up.” (The Message)

The New Living Translation says, “When doubts filled my mind, your comfort gave me renewed hope and cheer.”

The King James Version says, “In the multitude of my anxieties within me, Your comforts delight my soul.”

It has been three years since we said good-bye to Sammy, but I still have HoPE.

When I read verses 17-19 of The Message, I picture myself frustrated and frightened while dangling from a cliff that I had been trying to climb on my own.

Finally, I cry out that I’m falling, and instantly the Hand of God reaches down to firmly grasp my wrist to support me and assures me that I am going to be okay.

 

January 7

7 Jan

January 7. I spend 364 days of the year dreading that one day.

It is the day I had to say goodbye to my only child. He didn’t go off to college or join the military. He didn’t elope in Vegas or run away from home. January 7 is the day when he took his final breath on earth and took his first step in heaven.

On January 7, 2008, we celebrated Sammy and his life. In his final hours, he heard the voices of the people who loved him, the people who prayed for him, the people who cared for him. He heard us all gather around his bed as we each spontaneously told our sweet memories and stories about him. In those last hours, he heard the familiar sounds of laughter that he had heard every single day of his life. Not a day of his life was wasted, and every day was a celebration. I pray that those familiar voices and chuckles brought him comfort.

Sammy passed away on January 7, 2008 at 10:40pm. January 7 gets a lot of attention because it’s the day marking the anniversary of when we said goodbye.  But for Steve and me, January 8 is an even harder anniversary because that marks the day when we had to learn to live without him.